Struggling to get an EDS diagnosis

I went to see a rheumatologist a few months ago for a potential EDS diagnosis, I have all the symptoms and most of the comorbidities as well so I figured a diagnosis would not be difficult to get. The doctor felt around my joints and said they were super loose but said she couldn't diagnose me with EDS because "there's no way to know for sure" and she just told me I have hypermobility syndrome, so that was disappointing. I so badly want to see another doctor to get a second opinion it's the only condition that encompasses all my symptoms and my hematologist is convinced that I have it but he technically can't diagnose me officially. My geneticist also dismissed EDS as an option because she thinks I don't have a joint disorder which is very frustrating because my joints are my main problem. I have all the symptoms, hypermobility, dislocations, subluxations, elastic skin, very loose joints, lots of internal problems as well and I just want a diagnosis. Thoughts?

Your answer

Messymexi

2y ago

Also if you haven't yet, I use the Ehlers-Danlos website for doctor recommendations if you can't find any. You can search by state

hmm

2y ago

get another opinion for sure! it might be unlikely there will be one in your area, but if you can find an EDS specialist or even just a pain clinic or something like that it'd be worth looking into. I live in Alaska & i was diagnosed by a Dr who specializes in AND has hEDS & she was the only person who actually took me seriously & was able to figure out the problem right away... i actually went in for migraines & she saw just from the way i was sitting that im hypermobile lol. Also if any doctor ever refuses to test you or provide you treatment, make sure to tell them to put on your chart that they're refusing you treatment & why they're refusing it. A lot of the time they'll change their mind and suddenly want to help you (ie they don't want to get in trouble)

Luna.95

2y ago

Absolutely get another opinion 💕

Caitlin

2y ago

I was stretching at the gym and a physical therapist walked past and said oh you have hEDS don’t you and I was like what is that tell me everything !? She did and I do. I later made an appointment with her (for knee pain) and she bent me around and felt my joints and said oh yeah def hEDS. I then asked my doc for a referral and she said theyre just going to do what the physical therapist did and then say the same thing. So I would recommend finding a physical therapist in you area familiar with EDS. I’m sorry these jerk doctors dismissed your concerns hope this helps !

UnluckyUnicorn

2y ago

This happened to me! My rheumatologist said you’re just hypermobile and I’ll give you fibromyalgia but you aren’t worth looking into for EDS. Get another opinion

Messymexi

2y ago

Yes try to see another geneticist because they are the ones that can see the markers on your DNA and will tell you what type of eds or even if you have it. I had a hard time finding one for nonpregnant woman but they were able to tell me yes it's EDS

Chrys

2y ago

I’d try to get referred to a geneticist. That’s how I was diagnosed with hEDS and POTS. They found the coding for it in my DNA, so I was able to instantly get my diagnosis.

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